Newbie: Feeling a bit lost & adrift

[The-perfect-storm]

Hi,

After a couple of illnesses recently I had some blood tests that came back with 'strange results' my liver function was OK. My GP asked a blood specialist at the hospital for a second opinion that involved another blood test and an Ultra-sound.

The upshot was, I was diagnosed with enlarged spleen & liver (NAFLD) with scarring and cirrhosis which was a huge shock and to be honest I'm still coming to terms with.

My liver consultant told me to be teetotal and to lose weight, Well, I only drink sporadically with the odd splurge on special occasions so that bit isn't difficult (although giving away my collection of single malt whiskies built up over many years broke my heart). I have lost about half a stone although the weight loss seems to have plateaued. The specialist told me that I have had this condition for a very long time.

Apart from that, a leaflet and a follow up appointment in 6 months that's about it. I have seen my GP who has referred me to a metabolism/diet specialist at the hospital for advice on a diet plan, because the advice I have (self researched) seems to conflict, with different liver conditions needing different approaches.

Basically I don't know what to do next. I'm feeling like I've been cast off to drift aimlessly. I am the sort of person who prefers to deal with things head on have knowledge. I also fairly independent so have never used a help forum before I usually offer the advice. So sorry if my post is a little waffley.

A lot of you people out there talk about this test that test and quote figures; I have nothing like that, is that something I will likely have done at my 2nd appointment onwards. I am having a bone scan next week followed the next day by a gastroscopy to check for varisces

[carmik]

Hi

Have you been tested for all possibilities. i.e Inherited and autoimmune diseases.

[The-perfect-storm in reply to carmik]

No, my surgeon is under the impression it is the result of long term paracetamol based pain killers. To my knowledge I am the only one in the family with the condition

[freddie76 in reply to The-perfect-storm]

You say he is "under the impression". It is up to you but until all tests had been carried out for all possible causes and excluded,I would not be happy to accept that diagnosis

Yes once, everything else has been ruled out, fine.

Is this a gastroenterologist or a hepatologist making this diagnosis?

[The-perfect-storm in reply to freddie76]

Well that was a possible scenario, as I drink infrequently it is unlikely to be alcohol related, but I've been told my liver was "massive" i.e. very swollen My hospital refers to Dr XXXXXXXX Liver clinic, I have been taking painkillers to the recommended daily limit (sometimes a little beyond) for years.

[Porphyriamaniac]

Hi Fred, did this Dr definitely say cirrhosis? Not scarring and fibrosis? I'm no expert but I would think if they suspected cirhossis you would have either a fibroscan which is similar to an ultrasound to check the extent of the scarring on your liver or a liver biopsy? Have they mentioned either? I would get back in touch for clarification on your diagnosis and insist on it if it were me. All the best.

Stacie.

[The-perfect-storm]

Yes that's why I was so shocked, my wife was with me and she heard it too, I can only assume that I would get more help if I start to lose weight and show my commitment at the next appointment in June!?

[Porphyriamaniac]

Well it sounds like you are doing all the right things to help yourself anyway with your diet and everything. It's a bit puzzling to me that they've not told you more or offered a test to find out the extent or cause of your cirhossis. Keep us posted Anyway, good luck.

Stacie.

[The-perfect-storm in reply to Porphyriamaniac]

Thank you, My specialist said my blood results revealed a lot, and I had to have another load; I was told they would only contact me if they showed up anything of concern, so no news on that front is good news. My GP questioned how they diagnosed asking if I had had a biopsy, he seemed satisfied when I told him that they 'could tell' from some of the bloods

Regards

[carmik]

Sorry still not happy with what you are being told. No consultant worth his weight would be able to make a decision on bloods alone. I think you should be asking for a 2nd opinion with a hepatologist at another hospital which you are entitled to. Which hospital are you attending and what area do you live in?

[The-perfect-storm in reply to carmik]

I live near Norwich, I will go back to my GP and discuss my notes with him, I believe this new electronic system accesses my hospital records as well. I know they can get up Xrays and such because they've done it before.

As said my spleen is enlarged, my specialist said straight away "and I can tell you exactly why" I am having a bone density scan and a gastroscope to check for enlarged blood vessels in the gullet, stomach etc. due to what if I remember was something hypertension (back pressure from the liver was causing the spleen to enlarge) so whilst some things are happening I do feel feel a bit I suppose the best word is abandoned, but I don't believe this is intentional

[scampi2122]

Hi Fred you are in good company here, I am off for more ultrasound tomorrow and bone scan in the next few weeks. I have already done the endoscopy, fibroscan and an MRI scan. You need take an active interest in your care to keep an eye on things. You can request the hospital to copy you in on all test results and correspondence. It does not always work, but it does mean you have the information hand. I have an excellent liver nurse, who ensures I am kept up to date. All the best Mel

[The-perfect-storm in reply to scampi2122]

Thanks for that, you and the other contributors have really given me food for thought.

[The-perfect-storm]

Thank you for all your comments, I'm back to the GP on Friday to try and nail this so I understand where I go from here and indeed how strong the diagnosis is.

[Hidden]

If possible, get two medical teams involved. I was under the care of a GI and his comments were making me very nervous- stating that I would need a transplant or taken my spleen out- I was very depressed; then we involved a specialist hepatologist who did all kinds of tests and determined I was too early to even be concedered for a transplant- they said it would be too unessesary to do a biopsy.

[Garyvh in reply to Hidden]

Hi meteocal, how did you get two teams involved please? I haven't even got a team yet!

[Hidden in reply to Garyvh]

I research and found the group that work closely with a transplant unit. They requested my medical records from my internal medicine team, and my GI team before accepting to see me. They approved to see me and put me at easy stating that I am too stable to get a recommendation for a transplant but want to monitor me three times a year so they can intervene if nesessary.

I am not sure your insurance situation and limitations but first you need to request from your primary doctor a referral to see a specialist ( hepatologist). Many GI doctors do both, but a hepatologist will monitor only the liver, and if you have not seen a gastroenterologist ask to involve one to monitor other symptoms you may have but are unaware of

[Garyvh]

Hi Fred.

I feel like I'm reading my own story hereally - 'cast aside and left to drift aimlessly' like you said. When were you 'diagnosed' and what, if any, symptoms did you present with?

It's been 2 and a half months since I was diagnosed and I'm still waiting on a referall to the liver clinic.

All I can say is that you need to get in charge of your treatment.

Chip away at it, try and get something resolved each day - just take a few actions on it a week, make a few calls or whatever.

It's the not knowing that is the stressful thing but the NHS works at its own pace, and sometimes you need to give them a bit of a nudge "hellooo Im still here!"

I do hope you get the answers you need.

Best wishes

[The-perfect-storm in reply to Garyvh]

Hi, I was diagnosed in January. I had had a couple of infections that were slow to clear even with a change of anti biotics, so they ran some bloods the tests came back abnormal Low haemoglobin red cell and white cell counts, clotting agents low, (This also occurred 2 years ago but was put down to the drugs and illness I was experiencing plus my diabetes affecting recovery) Anyhow both times liver function results came back as OK, This time my GP (new one) asked for a second opinion at the N&N hospital. They suggested more blood tests and an ultra sound and was followed up by an appointment at the liver clinic. I can't really fault the timescale

I will say I had been having pain for some time roughly where my gall bladder used to be. And the palpations (if that's the word) above the liver on my liver appt. were very very uncomfortable.

[Kristian]

Hi Fred, if everything is stable then a 6 monthly appointment is pretty normal. You seem to have a few tests and things lined up so they'll want the results of those to help focus any management plan for you. It may be that they are happy just to keep monitoring every 6 months or so. If things appear to deteriorate then they may make those more frequent. The progression of cirrhosis isn't usually all that quick. Although i appreciate there can be exceptions.

[Hidden]

Hi. Did your blood tests include a full blood count (FBC)? An enlarged spleen could also be indicative of an MPN where the spleen takes over the production of blood cells because of malfunctioning bone marrow (often caused by fibrosis of the bone marrow).

[The-perfect-storm in reply to Hidden]

I'll try and find out on Friday to be honest with the amount of blood tests done I would think and FBC was done

[Saintgeorge]

It all sounds good Fred, follow their advice, trust the NHS, for your part look after your liver, use the blt website. I would like to wish you the very best with your tests. Try to keep as fit as possible, kit all helps

[The-perfect-storm]

Thanks everyone for all the comments,

Just had a letter from the hospital, the extra blood tests didn't show anything of concern, but my vitamin D level is "rather low" and is to be expected so more tablets on the way.

[The-perfect-storm]

UPDATE

So Tuesday had my bone density scan, it will be a couple of weeks till I get the results back from that.

Yesterday I had my gastroscoscopy, the procedure for me (I've had it many times) was the best ever. I don't remember any of the op which is a first for me.

Anyway the upshot is that due to this Portal hypertension I have developed varises, I can't take beta blockers so they need to be banded and that will be in the next couple of weeks. I hope my next gastroscopy (Oh what joy and anticipation) will be as tolerable as yesterday. I have developed a bit more inflammation of the oesophagus and stomach lining, so my new healthy diet may be containing stuff that doesn't suit me, never mind I'm sure that will sort itself out.

[Porphyriamaniac in reply to The-perfect-storm]

Hi fred, glad it was painless for you, hope the banding goes the same. Good luck. X